A few weeks ago, I glanced out my window and instinctively squinted. Before me was my backyard covered in a blanket of ice and thick snow, blinding me with the sun’s reflection. The rocky hills were now shiny and smooth, and the frozen landscape glistened in a magical way. The…
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
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The other day, I got my wheelchair stuck in a doorway. All I wanted to do was see the Christmas decorations at a local coffee shop. Perhaps even enjoy a nice cup of their matcha while quietly watching everything sparkle. Instead, I was wedged in the doorway, pushing my joystick…
Last month, the biotechnology company Scholar Rock submitted an application to the U.S. Food and Drug Administration requesting approval of an experimental add-on therapy to treat spinal muscular atrophy (SMA). The investigational drug apitegromab is intended to target a protein in the bloodstream that inhibits muscle growth with the…
As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been spreading across the country. All I could do was roll my eyes. After the past several…
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are the realities I’ve lived with and grown accustomed to for 34 years, there are still some…
“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my intuition that tells me something is wrong. As it turns out,…
“Alyssa, this is the best you’ve ever looked to me,” my gastroenterologist recently exclaimed during a routine appointment. Though I hadn’t felt my best internally, I took her word for it. After all, she’d been my doctor for more than a decade, and this was the first time I’d heard…
Every morning, my dog, Stella, impatiently waits for me to wake up. While it’s true that she loves me, it’s also true that she’s excited about the treat I give her after she greets me with slobbery kisses. Rewarding her with a treat is a routine I unintentionally started…
I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by taking over my breathing work. Over the years, this machine has become my trusty companion. I…
With every caw of a seagull and crash of a wave against the shore, I swore I felt every stressor in my life exit my body. OK, maybe that’s a bit dramatic. But the healing powers of the beach and its background noises are something I’ll never take for…
As I stared at the rolling green hills before me, I wondered what 8-year-old Alyssa would have thought of this moment. It was my nonprofit organization’s first charity golf tournament in almost six years, though the annual events dated back to 2010. However, the story began long before we…
With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m measuring my days by how much I took advantage of the warmer weather and beating myself…
I don’t always feel helpless, but when I do, there’s a bug in my vicinity. My house has felt like bug central this summer, and I’ve strongly considered moving out. OK, the latter half of that sentence might be an exaggeration. However, given that spinal muscular atrophy (SMA) doesn’t…
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